Céline Dion insisted that no changes be made to a harrowing new documentary about her battle with Stiff Person Syndrome (SPS) after she was filmed experiencing a lengthy spasm.
The Canadian singer was diagnosed with the condition, a rare autoimmune neurological disorder that causes muscle stiffness and uncontrollable spasms, in 2022.
Her subsequent struggles are set to be documented in new Amazon Prime release I Am: Céline Dion – a heartbreaking look at the superstar’s daily life since making the decision to withdraw from the public eye while coming to terms with SPS and its debilitating effects.
And the documentary’s director Irene Taylor says Dion was adamant that a near 10-minute scene in which she experiences a lengthy spasm be retained.
It shows her grunting, appearing to be in pain, while lying on her back in spasm, unable to move. She is attended by medical workers, before recovering and singing.
Taylor told the PA news agency she was thinking “should I film it” when Dion went “very quickly” into the attack, but decided to continue as the singer, known for her powerful voice, had told her not “to ask permission to film something”.
She added: ‘So in that first 30 seconds, I was not focused on filming, I was the sound person and my cinematographer was there.
‘But there were several people in the room and everyone was doing what they were trained to do to help her, they’d all been given medical training on what to do if this happens.
‘So she was in the best hands she could be in. If they needed an extra pair of hands, I would have dropped my microphone and gotten in (to) help them without a doubt. But I did decide to keep filming, knowing that we didn’t have to use it.
Dion revealed her diagnosis in 2022 and has previously said it that can cause spasms so strong that can break ribs and feel like strangulation of the throat.
Taylor added that Dion said “we can always talk about it later if I’m uncomfortable with it” and “just basically stayed out of the way”.
She also said: ‘After the episode occurred, and she sang that beautiful song, she left in very high spirits. Believe it or not, she left that location in very high spirits. And she was actually taking care of me.
‘She squeezed my hand and she was just about to drive away in the car, she reached her hand out the window. And she said, “Don’t worry about what happened”.